Category: Autism

Danni

Being Nonverbal Issues

Autism, Computers, Danni, M.E., Mental Health, NaBloPoMo, Physical Disability, Real Life

Since the care worker came on Sunday morning making me panic, I’ve been unable to speak (I regained it for a little bit during the early hours of Monday morning, but lost it again a few hours later when I struggled to wake Johan up to help me with various things). To make things more complicated, my hands are being silly so I’m not able to type as accurately as normal on my tablet, so it’s taking me a lot longer to say things using it than is normal for me (which is why I’m using the laptop to type this, as my touch typing still seems to be working). I’m also still panicking whenever I’m awake for a care call as I don’t know when or who it’ll be. This is not a good combination.

When I’m talking to Johan I’m using a lot of body language to communicate: nodding, shaking my head, shrugging my shoulders, using fingers for numbers or to select from options when Johan forgets to ask me a closed question. It’s definitely the fastest way to communicate at the moment. I also use a lot of gestures and made up signs to help express what I want, along with exaggerated facial expressions (Johan is more able to read mine than most people, but making them bigger means he’s unlikely to miss them or misinterpret them). We’re able to hold entire conversations this way, which is great when I’m not feeling up to using my tablet (such as when I’m very tired).

It’s less good when I need to communicate with someone else. The district nurse came this morning and Johan had to answer most of the questions for me, as it was taking me a very long time to type responses. That’s fine when he knows the answer (and to be fair he knows most of them) but he’s only human and he sometimes forgets important points or I need to bring up something else. I was often saying something as a response to a topic that ended a couple of minutes before, which made me feel awkward. It wasn’t horrendous, but it would have been a lot easier if I’d been able to speak at the time. The nurse was also using that patronising voice I hate, like I was a young child. I’ve noticed it’s used a lot more often when I can’t speak than when I can.

For the care workers it’s harder. Not only do I have to communicate, but I also have to cope with someone being in my personal space and touching me. Johan finds it very hard to cope with the calls and normally hides in his room, but I need him to interpret for me so he has to stay in here (I don’t get the choice of hiding if I want anything done). Yesterday morning he had his day service and the care worker was running so late we had to cancel the call as he needed to leave and there was no way I’d be able to communicate with them when they got here. I was asleep yesterday evening and this morning the care worker was incredibly loud, so I immediately panicked so wasn’t able to have anything done. You’d think that they’d know not to come into someone’s home yelling, but apparently not.

I don’t really know a solution. I can’t use my laptop all the time as it limits me to being on my back and eventually the weight becomes too much. I’m also yet to find a text to speech communication app that works with Chrome OS. I’ll still use the app on my tablet, but I’m constantly mistapping so I can’t set it to automatically speak when I select a button as I keep hitting the wrong one (or hitting them when I’m wanting to type something new). Yesterday one of the suggestions was dysmenorrhea when I was trying to type doing for an example of how bad my typing on there is right now.

In general I’m not coping very well right now. Very anxious, panicky and getting twisted thoughts that aren’t true but feel like they are. My mood has also plummeted and even penguins aren’t cheering me up. Johan is hoping this is temporary, maybe because I’m due a period, and I’m kinda hoping the same. It might be just down to the care situation though, in which case I’ll hopefully feel better once that’s sorted. I’m also in desperate need of sleep because I can’t manage at night because of the paranoia (if I close my eyes my brain makes me think someone is breaking in) and stuff happens during the day to wake me up. That’s probably also not helping. Physically I’m also doing worse than I have for a while, but that’s probably because of everything else. I hope things get sorted soon.

Danni

A Cup of Tea Solves All Problems

Autism, Computers, Danni, Gaming, M.E., NaBloPoMo, Physical Disability, Real Life, World of Warcraft

Well, maybe not but it does make me feel better.

I had the worst care call with this agency so far this morning. The care worker scheduled to come for my call phoned in sick, and as they’re understaffed the supervisor on call came to do my call. She was incredibly loud, and worse than that had her phone ringtone set really high so every time it went off I felt really ill. And it went off several times. I was hoping to have my teeth brushed and was considering asking for breakfast, but the phone going off so many times so loud right next to me meant I lost speech and panicked completely, so Johan had to ask her to leave. Due to the panic attack I ended up sleeping most of the day. I understand she needed to be contactable but after the first couple of times of me showing obvious signs of distress (hands covering ears, face scrunched up, curling up into a ball) I would have thought she’d have at least turned it down, but nope. And she’s meant to be one of the more senior members of staff.

This evening’s call was much better. A new care worker, but she actually read the sign on my door and was quiet. Johan helped explain what to do as I still couldn’t speak and was still rather anxious, but she listened and did what was needed. We’ve asked her to tell the agency we like her so we want her more often. She was surprised at how many different people I’ve had coming for my calls (apparently you’re not meant to get more than three different care workers a week- I’m getting at least 7) so understood why I wasn’t coping. She’s also going to ask for a rota for me as even just knowing who’s coming and when will be easier.

I’ve spent most of the evening playing games on my tablet and reading What If? by Randell Monroe. I’d bought the book for Sammie last year and she was really surprised when I told her last week that I’d not read it yet, so I bought the Kindle version for me. I’ve read the blog but it’s nice to have them all together, and I’ve seen a couple of questions I’d not read before. My laughing at the book made Johan interested, so now he’s reading it as well on his iPad. I had cheesy chips for tea which I’d been craving for a while.

Johan made me a cup of tea this evening! I’m not 100% sure, but I think it’s the first time he’s ever made me one. He’s made me hot chocolate a couple of times before, but he’s scared of normal kettles so it was a special thing. He’s not as scared of the new one cup kettle though so hopefully I’ll be able to have tea more often. Unfortunately the milk we had was bitty (the use by date was tomorrow so we thought it’d be okay) so he had to use the UHT milk I keep in for porridge but even with that it was lovely and made me feel better 🙂

I’ve got loads of Blizzcon panels and eSports to catch up with, but I’m taking a break today as I’m not feeling up to it after this morning. Hopefully I’ll get through them the next few days. I’m glad I saw the World of Warcraft Q&A yesterday, as they were the best questions asked so far, and Red Shirt Guy was first again! Finding out they’re just letting us switch specs whenever we like rather than having to choose two out of three (or four if you’re a druid) made me really happy. Johan and I both want to play more Heroes of the Storm when I’m up to it as it’s loads of fun.

I’ve got nothing particularly planned this coming week other than the CFS team coming out on Thursday. It’ll be the first time I’ve seen them since I got the hoist so it’ll be good to see if they can help me plan how I’m going to get out of bed more without risking going backwards. It would be easier though if I wasn’t so anxious from the care agency though as it takes so much energy I’d rather be using on things like getting up more or being on my computer. If it carries on much longer I might have to ask about going on direct payments now the council is able to manage them for me (which wasn’t available the last time I tried it). Hopefully there’s an agency in the area that can meet my needs as I just need consistency, communication and a bit of understanding of how things affect me.

Danni

I Like Co-op

Autism, Computers, Danni, Gaming, M.E., Mental Health, NaBloPoMo, Physical Disability, Real Life

Title has very little to do with this blog post, but I just played the Tavern Brawl with Johan in Hearthstone where we worked together to beat the boss, and it was fun.

I have been awake since 10pm last night. I’ve now been awake over 18 hours so hopefully will be able to sleep soon. This isn’t uncommon after activity so I’m not worried but not sure I’ll be awake for the care call tomorrow morning. We’ll see.

I’m annoyed at Tesco. It’s Guy Fawkes night tomorrow, and as it’s the first in a few years where I can actually go out to see some fireworks I wanted some traditional goodies for the occasion, so sent Johan out to get toffee apples, treacle toffee and parkin. He couldn’t find any of them in Tesco at all, not even a sign that they’d sold out. I know that parkin is a regional cake (common in Yorkshire and Lancashire, so both Johan and I both grew up with it) so I am not too surprised he couldn’t find it, but toffee apples and treacle toffee are both national traditional treats associated with the day, so I can’t understand a massive supermarket not having them. He’s going to hunt in Newcastle tomorrow to see if he can find some there.

I managed to get my computer working again overnight. First issue was the bootloader deciding it didn’t want to exist properly for some reason, and it was so broken it couldn’t even be repaired, so I gave in and reformatted Windows 10. That fixed that issue, but then it wasn’t detecting the second SSD I have where I store all my games and stuff I want to keep (all the important stuff is also backed up online but it would have been annoying having to download it all again). It was showing up in BIOS but not in disk management or My Computer. No idea what caused that or why it persisted through several reboots, but one person online suggested running a memory check and even though it came back with no errors after doing so it was showing up in disk management to be assigned a letter. Makes no logical sense but I’m not complaining now it works.

Next problem was trying to get sound working. I have a Bluetooth adapter my headphones plug into and I just couldn’t figure out why it wasn’t working. I spent a couple of hours trying to figure it out, before realising I needed to pair it to the computer for it to work. I’d been wanting to talk to Sammie but I didn’t manage to sort it until an hour after she’d left for school. Hopefully I’ll catch her soon as talking to her is one of my favourite things in the world. Just need to be on my computer at a reasonable time 😛

The rest of the day I’ve been dopey. I’ve been wanting to sleep since this morning but it just hasn’t happened yet. Had an anxiety attack around midday today and I couldn’t figure out what was causing it, which wasn’t fun. Johan gave me cuddles though and I eventually calmed down. On top that I had the anxiety and panic caused by not knowing what is going on with the care calls so I’m feeling really mentally bleh and not coping with other stuff as well as I was. I did manage to get my bedding changed at the evening care call though, and being hoisted into my chair while it’s being done is much less exhausting and painful for me than changing it in the bed would have been. I’m grateful that’s an option now.

I’m really hoping I’m well enough to watch fireworks tomorrow (I’ll be wearing ear defenders and maybe ear plugs to deal with the noise). I’ve also got Blizzcon to watch this weekend so hopefully the anxiety won’t spoil things too much 🙂

Danni

Home Care Issues

Autism, Danni, M.E., Mental Health, NaBloPoMo, Physical Disability, Real Life

At the end of September, the care agency providing my home care changed, as the previous agency lost the contract for not sticking to it. I’d had various issues with it, mostly due to lack of communication (I need to know what’s happening and when or I panic). I hoped this new agency would be better, but unfortunately it’s not been.

The new agency has only just started in this area, and they took on a lot very quickly. Unfortunately that meant they were incredibly disorganised. My care plan is a mess (the care workers struggle to find what they’re meant to do in it), it was missing the communication book for the care workers to write what they’ve done, and they promised to provide me with an email address but haven’t.

That was just the start. They’ve changed the times of some of my calls without informing me, and don’t send rotas so I have no idea who is coming or when. One morning call (written in my care plan as 10am) didn’t turn up until 12.30pm. Then a lot of times the carers just don’t turn up. There was one week where I only actually got 6 out of 14 calls because no-one actually turned up for the call. That is improving a little bit now (it’s been just over a week since the last missed call) but it’s made me very anxious and panicky. There have also been care workers showing up smelling so strongly of perfume or cigarette smoke it immediately makes me feel incredibly ill (the agency are aware that I can’t cope with strong smells and said all care workers are to read the sign on my door, which mentions it but often gets ignored). That’s on top of the problems of not being able to explain what I need every time and getting several different care workers each week, most of whom are new.

Johan hasn’t been able to contact them about any of this as he’s been too anxious, but he did tell his social worker when he had his review. The agency claimed he had been sending the carers away, but that happened twice on one day, due to that care worker smelling so strongly it took over an hour for the smell to dissipate (and Johan found it too strong, so it wasn’t just me). Most of the rest of that week no-one showed up with no explanation.

Physically I’m doing much better, but I’ve been doing a lot worse cognitively, at least partially because not knowing what’s going on with the care workers means I get incredibly anxious twice a day, and often end up having a panic attack, which was rare until this started. I’m now terrified to be left alone if a care worker is going to turn up, as I have no idea if they’ll know what to do and I’m not always able to remember things myself (mentioned in the care plan). I know me being autistic makes things a little more complicated, but just telling me when things change would be a massive improvement. If it weren’t for Johan needing the help I’d just cancel them all until I was able to cope again, but Johan doesn’t feel able to do some things and he shouldn’t have to.

Danni

The Advantages of Being Disabled

Autism, Computers, Danni, Gaming, M.E., Penguins!, Physical Disability, Real Life, World of Warcraft

I want to make it clear that I’d give anything to not be ill and be able to do stuff for myself, and most of this list is not through choice, but since I’m in this position (almost completely bed bound and incontinent) I like to look at the positives of my situation.

  • If I’m in the middle of something, I don’t have to get up to go to the toilet. I just go where I am (I don’t have any choice in this as I have no control, but it’s great when I’m in the middle of a fight in World of Warcraft or similar).
  • I have all my meals in bed. Sometimes I even get fed.
  • I get to order people around to do what I want. (I do normally ask :-P)
  • I can wear pyjamas all the time if I want. All clothes are chosen for comfort first.
  • Nearly all appointments take place in my room. It’s very rare I need to travel somewhere, and when I do I do so lying down.
  • I have a cool electric bed that lets me raise my head, legs or even the whole bed at the touch of a button.
  • I get awesome drugs that would fetch quite a bit on the black market.
  • My lights are remote controlled.
  • When I can get out of bed, I never have to worry about finding a seat as I take one everywhere I go. With my Trabasack I have my own table as well.
  • I can drink lying down with my eyes closed using my Hydrant.
  • I don’t need to wear shoes if I don’t want to.
  • If it’s cold, I can always have my blanket. And electric heat pad. And penguins.
  • When I go to hospital, I take my own pillows and quilt with me.
  • I get paid to stay in bed all day.
  • I can nap almost whenever I want.
  • I never do the cooking. Or any housework.
  • I have a massive U-shaped pillow that holds me in place so I don’t have to use any extra energy to stay comfy.
  • I can’t be late for most appointments. And if I am late for a hospital appointment, it’s never my fault.
  • I’m not allowed to pick stuff up if I drop them. Someone else does it for me.
  • I can’t get sunburnt.
  • I don’t need to worry about catching public transport.
  • People aren’t surprised if I act odd- it’s almost expected.
  • I can go on my computer whenever I’m well enough.
  • I’m always surrounded by penguins.